Special Needs Parenting – Finding Your Support

Finding support essential for parents of special needs teens

When your child is diagnosed with any kind of medical problem, it’s like you’ve joined a special club that you had no idea existed until you arrived. While connecting with other parents facing the same concerns as you is wonderful, it can also be sometimes challenging to make those connections.

support-for-special-needs-parentsWhen my son was first diagnosed with autism, I didn’t know anyone in the same position. I sought out every book I could find on the subject, did lots of Internet research (not always a good thing) and by sharing the news with friends was able to find a small group of moms with children on the spectrum who had a support group of sorts that met weekly for coffee. We would spend two plus hours talking about our children’s latest struggles and the struggles we faced – with schools and finding a therapist or psychiatrist. I know I was fortunate to find them, but depending on where you live it can difficult to find other parents who are walking a path similar to yours.

Social media, however, has changed that. Through Facebook, I’ve found multiple groups of mostly moms – there are occasionally a few dads – where they share what’s going on and ask questions or advice. Now that Michael’s getting older, I’ve moved away from the groups that focus on the younger special needs kids – the biggest topics there were “my child was just diagnosed, what do I do?” and “I think my child has this, but I’m waiting for an evaluation” – to groups that focus on parents with teens and adults on the autism spectrum.

Whatever the child’s age, there is a common theme: moms are worn out, worried about their child’s future, and feel alone. One post that resonated with me recently was a mom complaining – maybe complaining isn’t the right word – about how unfair life can be. She has an older teen with severe autism and she is tired, worn out while her sisters and friends carry on with a life that she dreamed of – full of activities, vacations, etc. that she doesn’t have the opportunity to experience. As my friends’ children grow up and get involved in different activities, I feel like Michael is always multiple steps behind. He doesn’t “do” much besides play Pokemon and video games although we did get him involved in taekwondo earlier this year. He doesn’t get invited to go many places with other people and frankly when I take him somewhere myself, I never know quite what to expect. Sometimes, everything is ok, but other times the trip just doesn’t work out and we end up leaving early because he’s bored, overwhelmed by the noise or says his stomach hurts and wants to go now. When that happens, I get depressed and think about how “unfair” life is too. I may visit one of those Facebook groups and vent or just express my frustration to a close friend, but then I have to remind myself that while I didn’t sign up for this “club,” I am there for a very important reason: my son, who I love so much and would do anything for and who repays me in sweet “I love yous” and special hugs.

For any parent facing challenges, it’s important to find someone to talk with and who will listen to what you’re going through — even if they aren’t going through the same thing they can still provide support.  That’s something everyone can benefit from.

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MaryBeth Matzek

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